Hypotonia Support Group

Hypotonia is a condition of abnormally low muscle tone (the amount of tension or resistance to movement in a muscle), often involving reduced muscle strength. Hypotonia is not a specific medical disorder, but a potential manifestation of many different diseases and disorders that affect motor nerve control by the brain or muscle strength.

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Madloul 07/20/2016

Hi all; my son 7month old has hypotonia, and now we feed him thru NGT.

We have lack of information about hypotonia and how to take care about my son. the diffeculties of life that he face it in futur.

unlucky I live in small town with basic support hospital and even the perdiatrician has lack of information about this situation and how to cure it.

please share me advices about it.

I really appreciate your support

anash0489 11/29/2016

My daughter is almost 10 months old and has hypotonia. She as well has feeding issues in relation to this she was previously fed via NG tube and now she has a Gtube...we discovered she has "silent aspiration" by doing a barium swallow study. Unfortunately I am still trying o find the answers myself (MRI and genetic testing has all come back normal so far, no muscle biopsy at this point) Brooklyn can't crawl or bare weight on her legs, she can sit unassisted but she kind of hunches and keeps her legs stiff as can be. We are fortunate enough to live in Cincinnati so all of our treatment is being overseen by some of the best pediatric doctors but even with that we don't have any definite answers, we don't know how long she will be like this either. It's very frustrating! Has your son improved at all??

anash0489 11/29/2016

I will add we are going to be seeing the feeding team at Cincinnati children's in two weeks, I'm hoping they can give me some more answers I will update after we are seen!

Madloul 11/30/2016

Thank you anash0489 for your replying.

I update you;

my son now he is 11 months; 2 month ago we did surgery for him; and now he seems stable.

we did for him tracheostomy surgery and now he is ventilator dependent. in addition to that gastrostomy feeding tube, muscle biopsy was done and sent for study... the result will come 25 Jan 2017.

again thanks for reply

Jgillis85 03/08/2017

How are your kids doing now that more time has passed?

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